Disease Registries and Other Disease Studies

Disease Registries and Other Disease Studies

Not sure what a disease registry is? A disease registry collects, manages and analyzes information on patients with a particular diagnosis over time, including blood and tissue samples, blood counts, symptoms, treatments, medical history and family medical history. The information collected helps researchers develop new therapies. Registries often contact patients on a regular basis to monitor their illness.

Contact: (604) 675-8172Population served: People who are diagnosed with a lymphoid cancer (Hodgkin lymphoma, non-Hodgkin lymphoma, lymphocytic leukemia or myeloma) or directly related to somebody diagnosed with a lymphoid cancer, worldwideMission:

The study's goal is to identify inherited genetic factors that influence susceptibility to lymphoid cancers or influence treatment effectiveness for these diseases. To participate, you will:

Answer questions regarding health and family history by telephone interview

If you or someone you know would like to participate, please contact the Project Coordinator, Amy English, or mail to Amy English, Lymphoma Families Study Coordinator, 7th Floor BC Cancer Research Center, 675 West 10th Ave., Vancouver, BC, Canada V5Z 1L3. All inquiries are kept confidential, and no travel is necessary.

Contact: 800-518-8474 - Stephanie Steinbart Population served: People diagnosed with WM at any early age (less than 35 years) or families with 2 or more members diagnosed with WM.Mission:

To obtain clinical information about Waldenström's Macroglobulinemia.

The National Cancer Institute (NCI) of the National Institutes of Health (NIH) is conducting a study to learn about WM and to determine what causes WM to sometimes develop in two or more family members

Participants will be asked to complete a questionnaire, give permission to obtain medical records and blood samples.

Disclaimer: These resources are regularly reviewed to ensure that links still work correctly and the resources listed continue to be helpful to our visitors. If you find that a link isn't working or information is incorrect or if you'd like to have your own organization listed here, please email directorycanada@lls.org. Because we want to be sure that our visitors find the most relevant resources, we encourage you to visit the organization's website for more detailed information.

Follow us

Newsletter subscription

This field is requiredEmail address

The Leukemia & Lymphoma Society of Canada (LLSC) is a voluntary health agency dedicated to blood cancers. We provide free information and support services to patients and caregivers. The LLSC mission: Cure leukemia, lymphoma, Hodgkin's disease and myeloma, and improve the quality of life of patients and their families.